Family anger at care snub for dementia victim

Norma Allan, 87, was diagnosed with the condition seven years ago when she started suffering short-term memory loss. Her condition deteriorated and her family sold her home to help pay fees at a care home in Thornton in Craven, near Skipton, where she has lived since 2007, receiving round-the-clock care.

But despite her condition, which means she is unable to do anything for herself including walking or standing, she is doubly incontinent and has no coherent speech, NHS officials have refused to pay her fees of more than 2,500 a month even though medical and social care teams treating her say her care needs are a result of severe dementia.

Last night her family expressed their continuing dismay at the decision by a panel from NHS East Lancashire, which had ruled her needs were primarily social rather than health-related and had no "complexity, intensity or unpredictability".

Her son Neville Allan, 55, of Skipton, accused the primary care trust (PCT) of a series of delays and errors in the process which he described as a "nightmare".

"It's unbelievable - the whole saga is horrendous," he said.

"My mum's not been treated by the PCT as a human being – she's being treated as an expenditure item and one they don't want to pay for even though the law says they have to."

He claimed officials had ignored national guidelines in June in initially refusing funding despite clear evidence Mrs Allen's needs were due to her dementia.

Last month a panel turned down an appeal against the original decision despite evidence from a psychiatrist, GP and the care home manager that her care needs were a result of her illness.

He said his mother's condition meant she needed 24-hour supervision. She had suffered a number a falls, twice sustaining fractures, and was now no longer able to stand and required a hoist and wheelchair to get about.

"Everybody that sees her cannot understand how she is not receiving continuing care funding," he said.

"Of the panel making this decision, not one has actually seen my mother and they are going against the recommendations of the people who have.

"The whole thing is so upsetting. I feel like a David against Goliath and I'm just banging my head against a brick wall.

"We're being appallingly treated by the PCT. The whole process is a nightmare, very intimidating, complicated and full of jargon - they operate in a different world altogether.

"It's so frustrating dealing with them – they won't answer any questions and if you challenge them, you're accused of being abusive.

"I am concerned by their actions as it affects my mother but also more generally how they must be incorrectly administering many other cases.

"The NHS should not be operating in this way and putting people through this stress, especially at such a distressing time."

He said he had cared for his mother for two years after she moved out of her home in 2005 due to her deteriorating condition but her needs became too great and she went to the home and the family sold her house.

In September last year, her GP from Earby in Lancashire applied for NHS continuing care funding although he was unaware of this until January when he was told his mother would be likely to qualify.

She had been screened by a number of health and social care experts who found she had severely impaired cognition and communication, with additional problems of mobility and continence, as well as psychological and emotional needs.

He said the family was now appealing against the latest PCT decision to the North West regional health authority.

In a statement, NHS East Lancashire claimed it could not comment on individual cases because of patient confidentiality.

It said eligibility for continuing health care funding was assessed under an agreed national framework which included the right of appeal by applicants to a regional health authority review panel.

It added: "If the patient is still found to be ineligible they then have the right to take their case to the health service ombudsman for review."